The European Union Committee of Experts on Rare Diseases (2010-2013)

The European Union Committee of Experts on Rare Diseases was formally established via the European Commission Decision of 30 November 2009 (2009/872/EC) . This committee was charged with aiding the European Commission with the preparation and implementation of Community activities in the field of rare diseases, in cooperation and consultation with the specialised bodies in Member States, the relevant European authorities in the fields of research and public health action and other relevant stakeholders acting in the field.

At the end of its mandate, the European Union Committee of Experts on Rare Diseases was replaced from 2014 onwards by the European Commission Expert Group on Rare Diseases , established via Commission Decision 2013/C 219/04 of 30 July 2013 which had its first meeting on 11-12 February 2014. The list of members can be found here.

The EUCERD fostered exchanges of relevant experience, policies and practices between these parties.

Specifically, the EUCERD was charged with the following responsibilities:

  • assisting the Commission in the monitoring, evaluating and disseminating the results of measures taken at Community and national level in the field of rare diseases;
  • contributing to the implementation of Community actions in the field, in particular by analysing the results and suggesting improvements to the measures taken;
  • contributing to the preparation of Commission reports on the implementation of the Commission Communication and the Council Recommendation;
  • delivering opinions, recommendations or reports to the Commission either at the latter’s request or on its own initiative;
  • assisting the Commission in international cooperation on matters relating to rare diseases;
  • assisting the Commission in drawing up guidelines, recommendations and any other action defined in the Commission Communication and in the Council Recommendation;
  • providing an annual report of its activities to the Commission.

The European Union Committee of Experts on Rare Diseases replaced the European Commission’s Rare Diseases Task Force (RDTF) established via Commission Decision 2004/192/EC of 25 February 2004 on the programme of Community action in the field of public health (2003 to 2008).

An editorial documenting the achievements of the EUCERD entitled “The European Union Committee of Experts on Rare Diseases: three productive years at the service of the rare disease community” was published by the Orphanet Journal of Rare Diseases in February 2014 to mark Rare Disease Day.